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Monday, December 10, 2012

I am a huge believer in chiropractic care. Not just for me, but for my whole family. We have the best Chiropractor in the world. She takes such good care of my family. I love that she doesn't hurt us and that she will be honest if we are not out of alignment. A couple of years ago my husbands back was killing him. He went in to see Kristy and she said "buddy you are completely fine, you just need to exercise and get those muscles moving and stronger". His response was "do I at least get 5 minutes from your massager?" Her response was "nope". That to me speaks volumes on if you have a good Chiropractor or not. I have been to a few before finding Kristy who would adjust me no matter what and did not care if their patients were addicted to adjustments. Kristy is the first one to turn people down. I love her honestly and professionalism.

I got off a bit topic for a moment, now back to the reason for this post. I have been taking Liam to Kristy well before he was diagnosed with U.C. He was colicky and had constipation problems when he was a baby. She was the only one who could give him relief. At first it freaked me out at the thought of anyone twisting my kid up like a pretzel and cracking him. I talked to Kristy in great lengths. She explained everything to me and was so gentle with him. He never cried, but in fact got super giddy after his adjustment. He would have anywhere from an hour to a day and eventually weeks of relief. Eventually he outgrew his colick and the problems went away.

When he was diagnosed with UC we asked her is she could help him. She said "I think it's worth a shot, don't you?" So once again we started seeing her and 99 percent of the time, he was all twisted in his lower spine. After an adjustment his diarrhea would not go away, but it definitely would lessen. His tummy aches would get better too. I am all for doing whatever to make him just feel slightly better even if it's only for a day or two. Recently I found a great article. Its a good read, so feel free to check it out.

Tuesday, December 4, 2012

So today we are starting a new medicine. Its called Apriso. He is to take two capsules a day. You may be wondering how is a 5 year old going to swallow two capsules like that. Well he isn't. I have to break them open and dump the little granules on a spoon and pour a little amount of juice on the spoon. He then takes the spoonful and chases it with water to prevent biting the granules. The granules need to stay intact because they are slow release and if he chews on them he will ruin the time release thus not allowing the medication to lubricate his colon. Wish us luck I am sure it will take some practice. Maybe one day he will learn how to swallow or they will make a kids version.

The reason for starting this medication is because Liam has been on Prednisone since September 3rd, 2012. He started on 20 mg, and although we have gotten him down to 10 mg, we just can't seem to wean him off. He is getting wicked headaches from being on it for so long, along with other side effects. After talking with his doctor we agreed to give this a try. Many adults that I have talked to said it worked well for them. They were able to go into remission while on it. Its a medicine that you stay on even if in remission. Like his doctor said "we start this then we need to continue even if all symptoms go away." At this point I feel like its a good choice, because prednisone is so dangerous for little guys to be on. The one thing that worries me about Apriso is there is very little information on how it affects children short term and long term. Adults who take this are already developed and can chance taking it. I just pray this medicine does not affect Liam's growth, weight gain, puberty, eye sight etc. Lets hope it does what its suppose to do and allows us to wean him completely off the prednisone. My goal is January 1st 2013 for Liam to be prednisone free. I think that would be the best gift to start the new year. I would love to hear from anyone and everyone who has been on this medication.

Liam had been six months in remission and two weeks after starting transitional kindergarten he started to show signs of a flare up. We contacted his specialist Dr. Davies to see what treatment we needed to start. She put him on the usual 20 mg of Prednisone. After two weeks of no change she decided to put him on 10 days of Flagyl to see if we could get his gut to calm down. It ended up working in the sense of he stopped having 10 bouts of diarrhea a day to 2-3 a day. We had an appointment scheduled within a week, so she said keep him on the prednisone and when I see him I will do a Flexible Sigmoidoscopy. I asked her "is there any prep for that procedure?" She said "nope". I asked her if they were going to put him under for that? Her response was "no, kids do really well usually". I tried looking up Sigmoidoscopies and kids online and found very little. I tried to prepare Liam mentally for the procedure he was going to have done. I simply explained that Dr. Davies was going to put a small camera up his bottom and look inside to see if everything was okay. He looked at me with BIG eyes and said "she is putting a camera where?' "I don't think so mama". Honestly I did not know what to expect or how he was going to react, but I kept being very positive with him.

The day of the appointment he was examined by Dr. Davies. She said she wanted to take a peek inside and make sure we were not missing anything. She was chalking this flare up to be an "emotional" flare due to all the changes he had been through. My heart sunk when she told me this. My child was so stressed from going to a new school, having a new teacher (even though he knew her because sissy had Mrs. Nikki) and making friends. This made me feel so bad and that I failed him. No parent wants to be told their child is sick due to stress. We were escorted into the procedure room. She told Liam to remove pants and underwear and to lay on the table. He was not the biggest fan of being as he called it "Naked" with just a sheet over him. It was the first time I had seen my little guy (who was only 4) be self conscious When the Doctor came in, Liam looked at me with complete fear. I told him I was going to hold him and he asked to see the "camera" I gave the okay to the doctor to show him, thinking it would calm him knowing what it looked like. Boy was I wrong. That kid gave me a look of hell no mom and he tried to get off the table. I quickly layed him down and started talking in his ear telling him to breath. The doctor took that cue and started the Sigmoidoscopy. Overall Liam did a great job. He mimicked my breathing and tried to stay still. The worst part was when she took the biopsy's. He cried and said it felt like several shots were being given inside. The whole procedure lasted no more than 10 minutes. How it is performed is he was positioned on his side and she inserted a flexible tube that had a camera on it into his rectum. She did not go very far into the colon. Just enough to see if there was inflammation or ulcers.

When the procedure was finished, Liam immediately jumped in my lap for lots of cuddles then asked to get his clothes back on. Normally when we are done with our visits with Dr. Davies, Liam will either hug her or high five her. This time however he bolted out of the procedure room trying to get out. Dr. Davies said "Liam your going the wrong way and you have not said bye to me." Liam looked at her and put his hand up as if to tell her to stop and not come closer. He said " I want out NOW and you stay there." I had my dad pick him up and told him to take Liam out in the waiting room where Nana and Sissy were. I think it will be a while before he trusts Dr. Davies like he once had. It made me sad, but I think it broke her heart more. The reason I am writing about this topic is because, I had no clue what this procedure was going to be like. I had worked myself up thinking the worse and when it was all said and done it was not as bad seeing him go through it. He was very brave and not as painful as I thought it might be. We were all so proud of him that he pretty much got whatever he wanted that day and he took full advantage.

I was talking to my good friend who is also our pediatrician's nurse. I was saying that it is so hard for people to understand, because looking at Liam you would never know what his body is going through. Most people think he looks normal. What they don't realize is his little body is attacking itself. They normally don't see the episodes of diarrhea he has, because we both do a good job at hiding it. He will hold it as long as he can so people don't know. People don't realize how skinny he is, because he wears big clothes. If you were to see my little guy naked you would be shocked. He has tiny arms and legs, especially during a flare up. They see a round face and think "oh he is healthy". Little do they know that is called a "moon" face and its from the medication. Liam is able to manage his behavior at school (which amazes me to this day), but when he gets home it can be awful. He will scream, cry, get extremely hyper and not know how to control himself. He will be running to the bathroom 5 or six times after school and will cry because he hurts. He will not let us hold him or touch him. He will refuse food or will act like he isn't getting enough food. Its hard on all of us. I think it can be the hardest on his sister. She has to deal with his annoying behaviors and ups and downs too. She often gets into trouble, because she is so frustrated with him she will just punch him, instead of asking for help. I am trying my best to intervene and help her before it comes to that, but I am not always able to.

Today, I had a freak out moment, because my friend was taking her daughter to get the nasal flu spray vaccine. Kids who are on long term prednisone, usually have low immune systems. When Liam was two we were told to stay away from people who got the nasal flu spray. I felt so bad, because I panicked and told the child and mom that Liam and her should not play together for a few days. I must seem like a crazy mom. I did not mean to sound crazy or upset anyone. Its just so hard, because we have to think about things that most people don't. I did not handle that situation very well. I feel bad. I hope with time I can learn how to handle things like that, instead of freaking out and scaring someone. I just don't want Liam to get the flu on top of dealing with U.C. UGH!!! So in talking with my nurse friend she told me that if I hear of a lot of kids in his class getting it or if lots of kids are getting sick I need to pull him for a while. So now I wait and see what this fall cold and flu season looks like. Has anyone had a freak out moment where you looked like a crazy mom?????

Well we had a great run for a while. Six months remission, I will take it any day. Liam was able to gain a healthy amount of weight keeping him at 50%. His height went from 50% to 75% which we were thrilled about. We not only saw those improvements, but we saw him gaining muscle which helped him become more agile, coordinated and strong. Liam got three colds during this time and was able to fight off two of the three. It was amazing. The last cold he got, turned into bronchitis and he was put on Zithromax. His little gut surprised us and handled it great. He did not get a flare up like he normally does from antibiotics which Mike and I were thrilled about. I was so happy his UC was holding its own. Liam started transitional kindergarten this August at H.O. He is so happy to be at school with sissy. They love seeing each other in between recesses. He is thriving and loving Nikki his teacher. About three weeks into school Liam did start to have loose stools. I kept an eye on him, making sure we did not deviate from healthy eating. I thought maybe I could get him through with the diet, but no such luck. After two weeks I realized he was getting worse. I started him on 5 mg of prednisone, because usually a tiny dose can get him cleared up. Unfortunately it did not work and he got even worse. After talking with his doctor we bumped him up to 10 mg hoping that would do the trick and again he got worse. We bumped him up to 20 mg and did stool samples, blood work to see what was going on. Liam was such a trooper. He cried when they put the band around his arm and was very nervous. I asked him if he wanted me to cover his eyes. He said "yes". As soon as I did that I started talking in his ear telling him to take slow deep breaths. I did not know if it would work, but he went for it. Slowly he started to calm down and breathe through the whole blood test. We were so proud of him. Even the nurse taking his blood could not stop telling him how brave he was. She said "Liam I wish all kids were as brave as you". I think he was proud of himself. A week went by and the doctor called to tell me everything came back fine. I told her we had a new symptom that morning. Liam woke up at 5 am screaming in pain. He cried for about 45 minutes until he threw up about a cup of mucus. We did not know what to make of it. Liam looked at me and said I all better mom and curled up in my arms and fell back to sleep. She suggested we start him on Flagyl and see if we can get him over the hump. She could not explain to me why Flagyl would work, nor why he threw up,which upset me a little. I hate giving my kids medicines without knowing why. We started Flagyl and within 24 hours Liam started having completely normal bowel movements. I am so happy for him, but worry we might be back to square one once he is off of it. By that time though we will be seeing his doctor for a check up, so we will go from there. She said he would have to be scoped for that visit. Not sure how that is going to go. When he got scoped last time he was put to sleep. This time she is doing it in her clinic. I hope he stays calm and we don't have to pin down a screaming child. I don't handle him screaming very well. I don't know how other parents give their kids medicine that is in pill form but here is how we do it:I crushed the prednisone and now Flagyl with a Pestle and mortar. I then pour the medicine on a spoon. Then I pour a few drops of Orange Juice or Pineapple Juice and have him take the spoon full. He then chases it with a shot of juice. We try to make a game of it and see how fast he can do it. He is so brave and never gives me any grief. If you only knew what these medicines taste like, they are awful. I would love to know how others get their kids to take it, just in case he decides one day to refuse taking it. Some side effects he is having from prednisone are:MoodyEmotionalMoon faceExtremely hungryAngryAt times does not want to be touchedHyperJoint Pain in kneesHairy back